Me, in a nutshell

Camping With A BiPAP/CPAP

Apr27
2012 1 Comment Written by David Thomas

David camping at the Living Forest Oceanside CampgroundSummer is almost upon us and it is time to start planning camping trips to get back to nature. For most people, this is as easy as packing your tent, sleeping bag, food, and some survival supplies and head out to the woods. However, if you are like a growing number of people who rely on a BiPAP or CPAP to sleep at night, this may seem impossible. It may seem even more impossible if you also use a power wheelchair like myself. Last summer, I made the impossible possible by camping at Living Forest Oceanside Campground & RV Park.

As a child, I used to love camping during my summer holidays. I used to go camping with my parents and with my Boy Scouts troop. Back then I did not need a BiPAP to sleep at night and I would simply charge my wheelchair at the campground office or guard shack. However, since needing a BiPAP to sleep I thought my camping days were over.

Campsite power service pedestal provides power for your CPAPThat was until I found the Living Forest Oceanside Campground in Naniamo, BC. The problem with camping with a BiPAP or CPAP is that you need continuous power throughout the night.  However, if you can find a campground like the Living Forest that provides power to your campsite this is not a problem!

I simply ran an outdoor extension cord from the service pedestal (pictured to the right) to the inside of the tent where I slept. I ran a second power cord from the service pedestal to my van where I charged my wheelchair at night.

So if you need to use a BiPAP or CPAP at night make sure that you choose a campground that has electrical hookups at your campsite. You may have to pay slightly more for this service but it is definitely worth it!

If you have any questions or if you have other tips about camping with a disability, please post in the comments below.

Posted in My Activities, Personal - Tagged , , , , , , ,

Yesterday I Had A Party…

Jun17
2011 1 Comment Written by David Thomas

An extremely bored girl.For years now all of my friends and neighbors have called me boring. “You’re so boring, you never like to party and just let loose and have a good time.” they used to say. And they were right. I was always friendly and welcoming, but I liked to keep everything pretty low key. I used to think those parties were too much trouble; all that cooking and cleaning, not to mention the loud music and rowdiness that sometimes gets you in trouble. “Better to be safe than sorry,” I thought.

Downtown Vancouver, along False Creek But then I started to think… Look at my place, it’s beautiful. I don’t mean to brag, but I probably have one of the nicest, cleanest places of all of my friends. I have an amazing view. I’m close to everything from shopping to hiking and skiing. I live right on the water and have exceptional ocean views. Surely someone as blessed as I, should be more generous to his friends and neighbors. I mean after all, when visitors come over, I should show them a good time, right?

Fireworks over Vancouver BC.So I decided to start trying to have more fun. I was scared of course… What if things got out of hand? But I kept it pretty simple at first, and for the most part everything turned out fine. I kept doing these simple parties for awhile and everybody had a great time! I considered not doing it anymore, but people kept begging me to have more parties like this. So I did. Still people wanted more, and how could I argue? All my worrying seemed pointless. Lots of other folks had much bigger and better parties and they were fine…

People celebrating on Robson Street after Gold Medal Hockey GameThen I decided to throw my biggest party yet. This one was going to be huge! It would definitely rival any of the parties any of my friends or neighbors ever threw. Now some people said I was crazy. That maybe this was too lavish, too expensive… But I went ahead and planned my biggest party ever in my own special way. Of course, I was nervous… So much could go wrong and everyone would probably say “I told you so…” But in the end, I threw my biggest and best party ever and only had a couple of minor problems. People raved about this party, even some of the ones who were against it in the beginning! This made me very happy. It was so good to see all of my guests having fun, making new friends and enjoying themselves. How could I not do this again?!

Canucks fans watching the game on Georgia StreetYesterday, I had a party. I invited all of my friends and neighbors, everyone to my place. “Come on over and watch the big game”, I said. I brought in some big screen TVs and prepared everything so that my guests were as comfortable as possible. I never asked for money or anything in return. I told my guests to sit back and enjoy, I’ll take care of everything and even clean up your mess after you leave. The party started really well. In fact, it kind of reminded me of my big party from last year. Lots of people came, from children to the elderly and they were all having fun! But it turned out that some of the

people who I thought were my friends weren’t after all. You see, I let them in and they took advantage of my hospitality and my generosity. They wrecked my house. They set fire to my furniture and broke my stuff. If that wasn’t enough they also stole from me. Robbed me blind and then took pictures and bragged about it on Facebook.

So friends and neighbors, you are welcome as always to come over for a visit. Please sit, relax and enjoy the views. But please excuse me if I go back to my old, boring ways. I need some time to think and heal.

I wrote this because I live in downtown Vancouver. I wasn’t able to join in the cleanup today and I’m not able to sign the wall at The Bay. Like most Vancouverites, I’m really disgusted and disturbed about what happened on Wednesday night. This is just my small attempt at making myself feel better and hopefully others will too. I’d really like to help turn this into something positive. So here is my plan:

If you feel the same way I do and would like to say “Thank you” to the Canucks, the Vancouver Fire Department, or the Vancouver Police, please consider a donation to one of the following charities:

For the Vancouver Canucks, who gave us an amazing year on the ice: Canuck Place

For the Vancouver Fire Fighters, who risked their lives putting out numerous car fires: BC Professional Fire Fighters Burn Fund

For the Vancouver Police, who protected us: Vancouver Police Foundation

For the EMTs and hospital staff who helped the injured: St. Paul’s Hospital Foundation

I’d like to also thank the countless volunteers and city crews for cleaning up and returning things back to normal as quickly as possible!

Raul from hummingbird604.com has also suggested that you could support the local businesses and shop at the damaged stores. They ARE hurting and need our help.

Another positive thing you could do is sign the petition to preserve the “Citizen Wall” for future generations.

Thank you,

David Thomas.

 

Posted in My Thoughts - Tagged , , ,

Life Is Like a Game Of Poker

Jan21
2011 Leave a Comment Written by David Thomas

Poker face.I’ve never been good at poker and I think I know why. I think that it is because I view poker much in the same way that I view life.

See, when you are born it’s kind of like being dealt your hand in a poker game. It is completely luck of the draw. Some people are born perfectly healthy and into wealthy families, while others are not so fortunate.

For myself, I was lucky to have been born into a relatively wealthy family. We were not rich, but just being born in a country like Canada makes your social economic status better than most people in the world. However, I was born with a severe physical disability. The doctors told my parents that I would probably not live past the age of two. At this point, if my life was a game of poker and the doctors were a poker expert, based on the odds they probably would have suggested folding.

I mean I was dealt a bad hand right? I suppose if this were a poker hand, I was dealt maybe an Ace high or perhaps a pair of Twos. Any poker expert would say that the odds of me winning would be very slim and the best play would be to quit.

But I say carry on. What if everybody else’s hand is worse? What if my hand improves during the next deal? Yeah maybe the experts are right. Maybe I’m not going to win, but if I fold, if I quit and don’t try; I’m definitely not going to win. I would rather try my luck and play it through to the end and see how it turns out, rather than quitting; only to find out later that I did actually have a winning hand and would have won despite having been dealt bad cards.

In life’s poker game, the optimist sees the pessimist’s night and raises him the sunrise.  ~Robert Brault, www.robertbrault.com

Posted in My Thoughts - Tagged , ,

This is SMA

Sep16
2010 2 Comments Written by David Thomas

I just heard about the SMA Blog Party on the Gwendolyn Strong Foundation website. I read many of the touching stories of families affected by SMA and wanted to write from my own perspective as someone who was born with SMA and is now living with it as an adult. Since Muscular Atrophy primarily affects children, I thought it was important to get my Mom’s insight into what it was like for her and my Dad. Here is what she wrote:

Writing this is bringing back very emotional memories. My pregnancy was normal. No signs of any trouble and the delivery was also normal. We were so happy with our new son. This was our first baby and I was very green at motherhood. My husband kept saying there is something wrong with David. He looked ok to me. Just his legs were relaxed. Looked like an adult would with his legs straight. Took him to our family doctor and he didn’t think anything was wrong. We tried to stop worrying.

When David was around 7 months old the doctor finally sent us to a specialist. They did a biopsy and we were told by the doctor that he had Spinal Muscular Atrophy and he would not live past 2 years. Well we were devastated and stunned. We had no counseling, no followup… nothing. We just drove the many miles home crying all the way.

David is a gift of God as he has impacted the lives of so many people including me. Especially myself, he has made me grow as a person. He has had so many close calls and each time I have held my breath and been in a fog hoping he would pull through. The Doctors told us that pneumonia would probably kill him if he got it. Then we were told he needed to have a spinal operation because his muscles were pulling his spine and causing scoliosis. He needed the operation as it was badly effecting his breathing and the longer we took to decide, the less likely he would survive the operation. That time was so bad but he made it. He is tough but at the same time delicate.

David has a beautiful personality and he has made us very proud of him. I always felt so sad as I know he wanted to do the things the other kids were doing and some of the simpler things are what hurt the most. He has lived well past what the doctors said he would. He is living on his own too and working, doing things that people can’t believe he is doing. SMA is a terrible thing to live with. But with determination you can raise even above that and my son is proof. I love him dearly.

I am very blessed for having such great parents. They never treated me any different than any other child. I went to a regular school, played in the local youth bowling league and went on many camping trips in Boy Scouts in my power wheelchair.

SMA is a degenerative disease and I can no longer do many of the things I used to do as a child. I miss being able to play video games and some of the simpler things like being able to write and feed myself. I try not to think about these things too much because what is done is done. Instead, I look forward to the things I can do and look back fondly on the things I have done.

This was and is me

SMA Statistics

  • SMA is the #1 genetic killer of young children.
  • SMA is estimated to occur in nearly 1 out of every 6,000 births.
  • 1 in every 40 people, or nearly 10 million Americans, UNKNOWINGLY carries the gene responsible for SMA. Few have any known family history.
  • SMA is a pan-ethnic disease and does not discriminate based on race, ethnicity, or gender.
  • There is currently no treatment and no cure, but the National Institutes of Health (NIH) selected SMA as the disease closest to treatment of more than 600 neurological disorders.
  • Researchers estimate that a viable treatment and/or cure is attainable in as little as 5 years – IF provided adequate resources.
  • The American College of Medical Genetics recommends that SMA carrier testing be made available to ALL couples planning a family, regardless of ethnicity or family history.

This is SMA. I’m one of the few lucky ones, but many others are not. I want to eradicate it. Through this website, we strive to raise awareness. Through partnerships with non-profit organizations and other SMA-affected families, we work to raise money for a cure. The Gwendolyn Strong Foundation is one of these organizations, and they currently are in a voting contest for $20K. If they win, the money will go towards fighting SMA.

Here’s how you can help them get there:

PLEASE VOTE: It’s really this simple –>

  • You can vote once EVERY DAY from now until September 29th at 5 PM EDT
  • Go to VoteForSMA.com, select the Gwendolyn Strong Foundation, enter the two security words, check the Official Rules box, and then click “Vote Now!”
  • That’s it! It’s really that simple :)
  • Don’t forget to add your name to the DailyVoteReminder.com list so you don’t miss a $20K vote.
  • And…don’t stop there — SHARE!

Please remember my story and vote daily.  Help prevent this disease from affect another innocent life.

Thank you,

David Thomas

Posted in Personal - Tagged

Can Cell Phones Be Accessibile?

Sep14
2010 1 Comment Written by David Thomas

I recently learned of a campaign by the Neil Squire Society to petition the CRTC to get Canadian cell phone providers like Rogers, Bell and Telus to provide at least 1 handset that will meet the needs of people with disabilities. If you would like to know more about this campaign, you can find it here.

This made me very excited because I also have a severe mobility impairment, which limits my ability to use my arms and fingers. As Ayogo‘s  only QA tech, I’m required to test our mobile apps on mobile devices. Due to my disability, I am unable to physically access my phone.

As you can see this negatively affects my ability to be gainfully employed and a contributing member to society. Perhaps even more importantly, I feel that this also negatively affects my safety and the safety of others around me. Cell phones are quickly replacing traditional land line phones and even computers as our primary source of communication. Without access to a cell phone’s most basic features, I’m unable to do something as simple as dial 911.

Currently, I’m able to use computers via a regular USB mouse and I type with an on-screen keyboard. Why is it that there are lots of great adaptive devices for computers, but nothing for cell phones? Sure, devices like the iPhone have features like voice dialing which is great, but it requires you to press and hold the home button to activate it. This makes this “accessibile” feature useless for the people who need it the most. I would like to be able to use my smart phone fully with a pointing device like a bluetooth mouse. I believe this would allow myself and others with mobility impairments to be able to use the device fully (perhaps with the exception of some third party apps that use motion detection). Is there anything currently available on the market like this?

I have looked into this online, and I recently came across this article posted on Mashable http://mashable.com/2010/05/09/ipad-magic-mouse/ It shows a jailbroken iPad that can be operated by a bluetooth mouse…  I understand that the iPad and iPhone run the same OS and according to the website Redmondpie http://www.redmondpie.com/control-ipad-with-magic-mouse-9140743 this also works on jailbroken iPhones and iPod Touches. If third party developers can make this happen on iPhones, surely it can’t be difficult for their internal developers to do the same? I really do not want to have to jailbreak my phone and risk voiding my warranty, or having Apple brick my phone. I understand that I could possibly use a stylus to control my phone, but due to my limited strength and movement, this would also pose problems.

If there was the ability to connect a pointing device via a cable or bluetooth, it would open doors to many people with physical impairements. This would allow people to use current adaptive devices and the possibility of creating new adaptive devices for operating mobile devices.

Any help or information you can give me would be greatly appreciated. I would be more than willing to help make something like this happen. If you require more information, please let me know. If you have any thoughts and / or information on this topic, please feel free to leave a comment on this post.

Posted in Technology - Tagged , , , , ,

Walk for Muscular Dystrophy 2011

Aug16
2010 Leave a Comment Written by David Thomas
Walk for MD 2009

My "Kapamiliya" from the 2009 Walk for MD

I’m very fortunate to live in a country that has plenty of support systems for people with various disabilities. There are numerous charitable organizations that are willing to lend a hand when you need it. If it were not for these non-profit groups like the Neil Squire Society, the BC Centre for Ability, Muscular Dystrophy Canada, and many others, I would not be where I am today. I have always felt grateful for the services these organizations have provided me, but I’ve realized that I need to do more to show my appreciation and give back.

Last year I gathered some friends and helped raise money for Muscular Dystrophy at the Walk for Muscular Dystrophy and I’m looking forward to doing it again this year! The walk will be on Sunday, September 12 so I have a little less than a month to collect pledges. I’ll be walking around Jericho Beach with hundreds of other walkers with all of the proceeds supporting Muscular Dystrophy Canada. As a non-profit organization, Muscular Dystrophy Canada is dedicated to finding a cure.  Through our donors and Walk for Muscular Dystrophy participants we’re able to raise funds, sustain research, and educate and support families affected by neuromuscular disorders.

I want to raise as much money as possible so that others can continue to benefit from the support of Muscular Dystrophy Canada as much as I have. Here’s where you come in, because I could use your support to help me help others. Could you please consider making a donation or passing this page on to your friends? To make a donation, simply go to my sponsorship page and click the “Sponsor Me” button. Any amount you can spare would be greatly appreciated.

Thank you so much in advance for your generosity!  With your support, we will make a difference in the lives of those affected with neuromuscular disorders.

Posted in Fundraising - Tagged , ,

Welcome to my world!

Apr27
2010 Leave a Comment Written by David Thomas

Welcome to my personal website and blog. I am a self-professed geek who loves technology. Oh yeah, I also happen to be living with a disability.

For the last two and a half years I have been fortunate enough to be working in the technology field, specifically with social networking. As someone with Spinal Muscular Atrophy, I have a great appreciation for technology and the power it has to make our lives better.

I recently wrote an article for the company I work for (Ayogo), detailing how I feel that games can benefit people with disabilities. You can read the blog post here.

Posted in Personal - Tagged , ,

About

I'm a full time social gaming QA Tech, part-time programing student, and all round geek in a chair!